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Posted 9/25/2006 5:36 PM (GMT 0)
Hang in there Joan.  I am glad you are able to get the sleep you need to break the cycle. May you continue to get good results from that!

***

Posted 9/25/2006 11:33 PM (GMT 0)
keep your chin up joan, better days are ahead! and there are a lot of friends out here for you :) yalinda
Posted 9/26/2006 5:00 AM (GMT 0)
Hmmm, I thought Erin ran away with the circus again. I've been practicing my juggling, but I may be more interesting in pursuing the cotton candy twirler career path. Hope everyone is swell! Wow bad pun.
Posted 9/26/2006 5:07 AM (GMT 0)
we have been wondering where you were Dave... so good to see you again!
Posted 9/26/2006 2:12 PM (GMT 0)
Moanin' Everyone... hope all is well with you... 3 hours of sleep last night... And I couldn't get in to see my Primary... looks like it's gonna be one of those days!
Posted 9/26/2006 3:00 PM (GMT 0)
dave i so miss your witt tongue .... it was like waiting for House to come back to tuesday nights!

it must feel great to be missed.... i know u were in hiding again from the FBI!  most wanted list right? 

 

camama, how r u feeling?  been thinking about u and just wondered.....

 

here i go again no i will not name names!  but maybe one more cuz i wondered about Aldo?

 

ok enough!  well i am skipping my confessions on the diet thread til later...... dang i got to go buy me a case of that sugar free jello and fat free cool whip at BJ's ........ i am dying here for sweets, but thats another thread! 

 

 

yalinda

 

 

Posted 9/26/2006 3:28 PM (GMT 0)

Hi Yalinda, I'm doing better. Still feeling mucky in the nose and  chest a little and VERY tired - BUT, I had insomnia the other night, I realized I haven't been taking my B Complex/folic acid, the mornings here have been cold and wet (the afternoons hot), and I have been doing some cleaning and stuff over the weekend......so, I guess I can understand why I'm so tired and achy and seem to have sinus issues still (it could be SO much worse! So don't take this as a complaint at all!)

I just hope these few pounds I put on hasn't gotten my liver acting up and causing this fatigue. I know that sounds silly, but my body seems to have a weight limit. I know by a certain weight I start having sciatic nerve problems and/or I'm a mess with my liver, my stomach starts swelling, I FEEL the weight suddenly, etc. With 80 extra lbs, a lot is going on.

Anyway, my hair is thinning again and I have gotten that liver/side pain a couple of times....so, even though I'm trying to start exercise and diet on the diet thread - I'm also watching myself as not to get REALLY sick.....I've been on such a good roll with my health overall since I got over that 2 month flu in March. . . . . . it's a nice change not to be seriously ill like I have been for the last 3 1/2 years!

So, I'm being cautiously optomistic that slow and steady will win this race as I know I'm doing pretty well considering, but can teeter the wrong way very easily. Thanks for listening.

Hope everyone else is doing better! Dave, it IS good to hear from you!***

Posted 9/26/2006 9:38 PM (GMT 0)
camama oh learn from me and dont miss taking that folic acid..... it was havoc on my system with the deficency.... we are all taking baby steps all together...just hang in there ... we are all there for you! yalinda
Posted 9/27/2006 4:31 PM (GMT 0)
Thank you! I'm hanging in there best I can. It's hard...I'll keep you posted.
Busy with nonstop doctor appts this next week coming.
Got an 86 on an exam despite everything!
Hoping that I get switched to a better TX for RA to help control these flares.
With love,
erin (oh and thanks Joan...click on my username & you can see my personal little biography. :) )
Posted 9/27/2006 4:32 PM (GMT 0)
An 86! Look at you! GREAT JOB! Good luck at the docs this week.. much love for ya!
Posted 9/28/2006 3:48 AM (GMT 0)
hey erin congrats!!!!! we are all rooting for you! hope you get some RA relief from ther doc yalin
Posted 9/28/2006 11:18 AM (GMT 0)

Way to go Erin!  Best of luck with your doctor appts. this week.  Have you tried remicade yet?  that's one of those all in one  (IBD,RA, anything else that is bothering you) drugs.  I'm finding out enbrel is one too, but is much milder than humira or remicade.  Don't know much about the other new tnf-inhibitors (Orencia, and something else). 

Is there a reason why your doctor has not put you on mtx?  I know for me, mtx made all the difference in world when it was combined with the enbrel.  And even though I'm no longer taking mtx, it seemed to have kick-started the enbrel and I'm doing much better than before. 

Everyone, feel better.  Here's to a great rest of the week and forthcoming weekend.  Dave, I've always wanted to be a carny--still working on the talent part of that, though.  Maybe these drugs we take can cause us to grow gills or something....

Elcamino

Posted 9/28/2006 2:06 PM (GMT 0)
Hey El... Erin used to be on Enbrel, I believe she was on it for over a year or 2 years... it just stopped working for her... I know she said that her rheumy said before if Humira didn't work, then she would have to go to Remicade.... He has wanted to put her on MTX before, but because she can't take any type of birth control, she is holding off on it...
Posted 9/28/2006 2:23 PM (GMT 0)

OH, I see.  Birth control, or lack thereof, was also my problem with taking mtx at first.  I can't take any hormone based birth control, and an IUD just did not sound very appealing.  So I chose to forgo the mtx for over a year.  I have a tubal ligation scheduled in a couple of weeks, though.  Even though I'm no longer taking mtx, I've decided I am complete with my family so just get it done.

Erin, I completely understand where you're coming from with the birth control thing.  Have you thought about an IUD?  I know that some IUDs come with hormones, but most of them do not.

Elcamino

Posted 9/30/2006 5:45 AM (GMT 0)

Erin, CONGRATS on the 86 even with all your ill-health issues last week!

Still very fatigued....tonight is a tad better, oddly enough, I had a caffinated soda today = hmmmm, could caffine withdrawls be part of this fatigue as well?

***

Posted 9/30/2006 12:18 PM (GMT 0)
Hey CaMama, I know when I try to cut sodas out, I get caffine withdrawals.. Usually it is a pretty bad headache and fatigue.. how long has it been since you've had a soda?
Posted 9/30/2006 2:56 PM (GMT 0)
Well, yesterday was the first one I had in quite a few days. The one before that, I nursed a can for 3 days.....it was probably a week before that one.....I've been tired for some time now - the little bit I had before yesterday didn't seem to make a difference (but since then, I started taking my Bcomplex again.)

I think there are a lot of factors causing the fatigue....long as I don't get sick and it's not my liver!

***

Posted 9/30/2006 2:57 PM (GMT 0)
Did the fatigue start before or after you quit working?
Posted 9/30/2006 3:22 PM (GMT 0)

Well, I stopped drinking a can of diet soda a day when I quit work.  I think I was tired and starting to feel run down before I stopped working and was feeling I was ready for a break, but it really hit about a week after I stopped working. I don't feel depressed (just baffled still) about not working, I've been extremely happy being home with the prospects of staying home through the end of the year.

***

Posted 9/30/2006 4:12 PM (GMT 0)

moanin' ya'll,

gosh it feels like a long time since i've posted.  but thank all of you for the kind encouragement...it helps, A LOT! :-)

thanks Duck for speaking on my behalf! You did it quite well! lol. Shoot, I'll fly ya up for my SSDI hearing & you can be "My Cousin Vinny" and act as my lawyer. tongue

so, will be starting REMICADE next week. rheummy was very attentive &  it may seem weird, but going psycho last friday @ the ER really helped! lol.  made the docs act more aggressively to get the RA in check. Very happy w/ the rheummy now...he's invested in getting me better now, & the communication between us is GREAT!  seeing him at the end of a day where i was attempting to carry out normal activities was a good idea. he saw how bad my joints were and how bad everything gets when i'm out for the day & trying to work, etc...

looking forward to Remicade. he said it works rather quickly & i won't build up a tolerance to it like i did with the Enbrel & Humira (that's my problem...the RA is too severe & all of these meds quit working after a year or so).

so folks, that's the story!

write back later on...i can do some catching up today. missing everybody when i can't get online everyday. sad but you all have been fantastic in helping me through really rough weeks.

till later,

erin :-)

Posted 9/30/2006 4:51 PM (GMT 0)

yeah   yeah yeah yeah   yeah WOO-HOO!  Doing the happy dance for Erin!  yeah yeah yeah yeah yeah

Posted 10/1/2006 7:08 PM (GMT 0)

Hi everyone,

I'm not here too much but I just had to post that I had a very successful spine surgery on Sept 21, was released from hospital the 23rd and am feeling sooo much better. The day after surgery they got me up out of bed (with a walker) and I just could not believe the pain I had before surgery was gone!!! I couldnt really walk or stand anymore for any lenght of time and when I did stand I had to bend over forward...and when the nurses got me out of bed I could not believe I stood up straight! Even though it was painful to get up it was such relief as I was stuck in one position in bed and everything was getting numb and crampy. It's been a little over a week since my surgery and yesterday I already went for a little walk around the block with a cane. I also have lupus so I was afraid I might flare up after surgery but so far, so good. The plaquenil seems to keep it pretty well under control. The only thing is this morning my other joints had some stifness but i think it was due to the rain. I dont even care anymore if my other joints get pain b/c the pains I had before due to my stenosis I think were so much worse and no meds seemed to totally help it. I couldnt believe how nice everyone in the hospital was (and even told them so..lol). I was able to have someone drive me to the pharmacy and I picked up a bunch of thank you cards for all who sent me cards and flowers, etc...and I even sent thank you cards to the hospital and my doctor & his nurse. I just needed to type this all out & share it. Now I hope I didnt jinx myself and end up getting a flare or something <LOL>

Posted 10/1/2006 8:07 PM (GMT 0)

WOW, that is so awesome! I hope your joints treat you well, even in the rain! Keep up the walking (I hear it's good recovery therapy!)

Thanks for sharing. It's so good to hear good news!

Take care!

Posted 10/1/2006 9:47 PM (GMT 0)
We're creeping up on 50 posts... I'm going to request this thread be locked... Look for V17...
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